Revolutionary new cancer treatments won’t be available in many rural areas of the U.S.

Two new cancer treatments have shown miraculous cures, but if you happen to live in Arkansas or Montana, or a handful of other rural states—let alone outside the U.S.—you’ll have to travel hundreds of miles to get them. And it’s by no means certain that they’ll eventually be available everywhere.

These groundbreaking gene therapies, Kymriah and Yescarta, were approved last year in the U.S. Not only are they hugely expensive—Kymriah is $475,000 and Yescarta is $373,000 for a one-time treatment—but for now you can get them only in certain urban areas. We mapped those locations below. (Current Kymriah sites are red; current Yescarta sites are blue; sites where both therapies are available are green; and planned Kymriah sites are orange. Click on the tab in the top left corner to see a drop-down list of all sites.)

As you can see, some of the biggest gaps are in rural states, where cancer already kills more people than it does in cities. That’s a problem because both therapies are given as a last resort when traditional cancer drugs have failed. By the time patients get Kymriah or Yescarta, they’re often very sick, so traveling long distances is hard and could delay treatment.

To be fair, it’s early days and the companies that market the therapies, Novartis and Gilead, have plans to eventually add more sites. But in the short term, some far-flung cancer patients may be out of luck. And even in the long term, there are factors that could limit their access.

Called CAR-T cell therapies, Kymriah and Yescarta involve a highly specialized process. Doctors extract T cells—one of the immune system’s weapons against disease—from patients and genetically alter them, essentially supercharging them against cancer cells. They then infuse the modified immune cells back into the body.

Many patients have had remarkable recoveries, but they can also suffer toxic and sometimes deadly side effects. Aaron Levine at the Georgia Tech School of Public Policy, who has studied the ethics of CAR-T cell therapies, says these side effects will likely be the biggest obstacle to making the therapies more widely available, “as only a small number of physicians and medical teams are prepared to address them.”

If a lot of patients suffer these side effects or die in the initial rollout of Kymriah and Yescarta, that could slow the addition of more sites.

Another factor is that right now, CAR-T therapies primarily treat rare cancers. Currently, Kymriah treats a type of childhood cancer called acute lymphoblastic leukemia, and Novartis thinks only about 600 patients a year will be eligible for it. Yescarta treats large B-cell lymphoma in adults, and Gilead estimates it could help around 7,500 people a year.

“The reality is, the market isn’t that big, so it doesn’t make sense to train everyone to do it,” Levine says. More CAR-T therapies are in development, but so far it’s unclear how well they will work for more common cancers.

There’s also the question of whether insurance will pay for these staggeringly expensive treatments. Only a handful of patients have been treated with Yescarta; hundreds more are waiting because of payment delays. If some insurers decide they won’t cover the cost, that could foil companies’ plans to expand treatment sites. “We need to watch out for a situation in which these therapies only become available to urban elites who live near academic medical centers,” Levine says.

Still, Levine is hopeful. “It’s still early enough for things to change and evolve,” he says.

Peter Emanuel, director of the Winthrop P. Rockefeller Cancer Institute in Little Rock, Arkansas, which is 350 miles from the nearest treatment site for Kymriah or Yescarta, isn’t worried about what the map looks like right now.

He says administering these therapies and managing potential side effects requires a large and specialized team of hospital workers, so it’s probably best—at least for now—that Kymriah and Yescarta are available only at hospitals with more resources.

The real test, says Emanuel, will be if and when new CAR-T therapies are approved for more common cancers. “At that point, I think it’s justified to expand the number of centers, and hopefully that expansion includes smaller cities and more rural states,” he says.

I am MIT Technology Review’s associate editor for biomedicine. I report from Washington, D.C., where I look for stories about how new technology is making us healthier and our medicine better. I am particularly interested in how these advances… More

A lack of oversight of the national repository of Medicaid data caused an estimated $36.7 billion in payment errors in 2017, according to a new Government Accountability Office report. That’s up from an estimated $14.4 billion in improper payments in Fiscal Year 2013.

Transformed Medicaid Statistical Information System (T-MSIS) is CMS’ core effort to improve Medicaid data by increasing the scope of data and quality of state-reported data.

About 49 states began reporting that data to the national repository in November, up from just 18 states the year prior. The data help federal administrators to identify potential fraud and improve the efficiency of the program, but data aren’t sufficient enough for an effective oversight of the program.

“CMS has taken an important step toward developing a reliable national repository for Medicaid data,” the GAO report authors wrote. “However, data challenges have hindered states’ and CMS’s use of the T-MSIS data for oversight.”

For example, the reported data was incomplete for all of the selected six states reporting data in August 2017 as the states said that “certain unreported elements were contingent on federal or state actions and others weren’t applicable to the state’s Medicaid program.”

Further, states failed to mention in documentation whether those elements would be reported in the future, or when they would report complete data.

Six of eight selected states actually expressed concerns about how T-MSIS data could be compared across states. While all states reported interest in information sharing across states, CMS hasn’t compiled or shared information about states’ data limitation – an act that would help states improve accuracy when comparing data between states.

Although CMS has taken those first steps to using T-MSIS data, it doesn’t yet have a plan or even a timeframe to use this data for oversight.

“As a result, important CMS goals for T-MSIS, such as reducing states’ reporting burden and enhancing program integrity activities, are not being fully realized,” the report authors wrote.

GAO officials recommend CMS improve the completeness and comparability of T-MSIS data to accelerate the program, in addition to articulating a specific oversight plan.

The U.S. Department of Health and Human Services agreed with those recommendations and said it would continue to work on obtaining complete T-MSIS data from states. Further, the agency said it will take steps to address data sharing limitations within states, along with helping states collaborate.

“Strong Medicaid data can help the federal government and the states move toward better health outcomes and improve program integrity, performance, and financial management,” HHS officials told GAO, according to the report.

A new study says yes, but only if the prices are easy to understand.

For any medical procedure, from a minor checkup to major surgery, there can be significant uncertainty about a key component: the price.

Indeed, for healthcare, unlike most products and services, we typically don’t know the exact price we will have to pay until after we receive a bill.

But what if there was greater transparency about the exact out-of-pocket price we would pay for a given procedure and how much that price varies across hospitals or providers? Would that change the providers we choose?

The answer is of interest to policymakers, whose goal is to encourage consumers to be more price-sensitive, saving money for themselves and reducing spending in the system overall.

“There’s a decades-long debate in healthcare about whether you can actually get people to shop on price,” says Elena Prager, an assistant professor of strategy at Kellogg. “We tend to view medical services as a different kind of product where price may not matter much.”

She finds that, indeed, price shopping in healthcare is possible—but it involves presenting consumers with price information in a much more simplified way than insurers typically do.

Do Healthcare Consumers Price Shop?

Think about your own healthcare bills for a moment. Do the words “simple” or “clear” immediately come to mind? Likely not.

“Even when people get an explanation of benefits from insurers, pricing can still be pretty opaque,” Prager says.

This is a problem because policymakers and insurers are trying to motivate consumers to understand the cost–benefit trade-offs of their healthcare decisions, as well as the value they are getting for the money spent—both out of their own pockets and from the balance sheets of insurers. But in most cases people lack the information to make informed decisions.

“On one hand, we’re asking for people to pay for more and more of their care” due to, for example, increasing deductibles and the rising cost of healthcare, Prager says. “But on the other, we’re not giving them the right tools to make good decisions about those large monetary amounts. So it’s important to understand whether it’s even possible to design effective healthcare price-information systems.”

Much of the earlier research on how to encourage price shopping in healthcare often focused on high-deductible health insurance plans.

“Even for care that serious, people are willing to trade off hospital prestige or distance to their house in order to save money.”

The logic was simple: if consumers have to cover a larger amount of their care—based on deductibles that could run well into the thousands of dollars before insurance coverage kicks in—they would be more price-sensitive when choosing services or providers.

But findings showed people had little sensitivity to price even when using these high-deductible plans.

“That’s because high-deductible insurance only solves one piece of the price-sensitivity problem by giving people more skin in the game,” Prager says. “These plans still don’t give enrollees sufficient price information. So people still have to figure out what the actual price they pay will be.”

That may mean finding and adding up prices from multiple medical areas and providers, even when considering only a single procedure. There may be different bills from the hospital and from the doctors working at the hospital, and from anesthesiology, surgery, the hospital pharmacy, and more. The information is often difficult to find, if not impossible.

The Simpler, the Better

Prager’s research used unusually transparent data from an insurance system in Massachusetts.

The study examined private health insurance claims from multiple insurers from 2009 to 2012. But importantly for the research, all these insurers gave consumers very clear information on cost.

Additionally, in many of the health plans, these insurers group hospitals into “tiers” based on price. A hospital’s tier determines consumers’ out-of-pocket payment for a given procedure at that hospital.

“For any procedure, such as a knee replacement,” Prager said, “people on these plans could look at insurer-provided documentation and on a single page see the price menu for all hospitals in the state, by tier—first, second, or third—and exactly what their out-of-pocket price will be. And it’s a set dollar amount, not 10 percent or 20 percent or the total cost. Just $300 or $700 or whatever, end of story.”

In some health plans, the difference in cost from one tier to another was substantial; for others, there was little to no price differential; and others simply had the same copay for all hospitals without using tiers. This allowed Prager to compare how consumers responded to the option to price shop in a very transparent system.

The data studied included the insurance plans of over 200,000 enrollees and dependents, the out-of-pocket prices they saw while making treatment decisions, and how much they and the insurers paid for procedures. The researchers focused on inpatient services—such as major surgery or delivering a baby.

The Power of Presentation

Prager found that people in the study did indeed opt for lower-priced medical services when presented with clear, simple price information.

For example, she modeled how the same patient would behave when enrolled in different types of plans—those with large cost differences between hospitals and those with none. She found that total spending per hospital stay fell by 1.3 percent when consumers were presented with cost differences.

Prager predicts that providers in the lowest-priced tier would gain about 53 percent in patient volume over three years due to price shopping.

“People weren’t sure price shopping in healthcare was even possible,” she says. “These findings show that it is.”

Indeed, people in the study were making price-based decisions about inpatient treatment, the type of higher-stakes interventions that required overnight stays.

“Even for care that serious,” Prager says, “people are willing to trade off hospital prestige or distance to their house in order to save money. So we might expect to see even greater price-shopping behavior for less serious care.”

Still, it takes an extremely simple approach to presenting price information to help people make healthcare decisions. “We haven’t been good at providing that in the US system,” Prager says.

Greater availability of simple healthcare price information would be good news for consumers and insurers alike. Patients save out-of-pocket costs by choosing lower-priced services, and insurers can save even more.

“Hospitals can differ by thousands of dollars for a given procedure,” Prager says, “and insurer savings can be many multiples of what consumers save when choosing a lower-priced option. Though not a guarantee, that might lower insurance premiums in the long run.”

What About Providers?

What are the implications of Prager’s findings for hospitals, physicians, and other providers?

“The level of enthusiasm providers have about these results will differ by where they are currently in the price distribution,” Prager says. She breaks down providers into three broad categories similar to the tiers insurers use.

Low-priced providers should be “thrilled” about price shopping, she suggests, because they can keep prices where they are and enjoy more volume because price-sensitive consumers will pick them when presented with clear price information.

Medium-priced providers are more likely to lose patient volume to lower-priced competitors because consumers will choose price over reputation or other factors such as proximity to home. “That will siphon off some volume from providers priced in the middle,” Prager says, “but they can try to negotiate lower rates with insurers in subsequent years to get into a lower tier.”

High-priced, highly desirable providers “won’t really care about price shopping,” Prager says, “because patients are willing to pay whatever it takes to get their care there.” She points to the Harvard-affiliated academic medical centers in the study as examples. These providers have such strong reputations that fewer consumers are willing to switch away from them, even if the price difference is stark. This means less savings for consumers and, especially, insurers.

The good news for patients and insurers is that the number of tiered insurance networks that have easier access to simple price information has grown in the last decade or so.

Over 10 percent of people enrolled in the Affordable Care Act exchange plans are in plans that are structured this way, Prager says, and a growing number of large employer-sponsored plans are, too. At the same time, many other insurers remain overly reliant on complex pricing tools, typically online, through which enrollees can search for providers and prices by procedure and zip code—but prices are still presented in a complicated way.

“Those complex tools are the darling of the industry,” Prager says, “but they don’t always work as well as hoped because they leave a lot of uncertainty about pricing. Instead, providing a simple menu of tiered-network options and prices has serious advantages that should be even more highlighted going forward.”

This chart collection takes a look at how spending on healthcare in the United States compares to other OECD countries that are similarly large and wealthy (based on GDP and GDP per capita). The analysis looks at 2015 health data from the OECD Health Statistics database. These charts are based on data from the OECD, allowing for international comparisons; however, some values from OECD are reported as provisional or estimated and may not exactly match U.S. data reported in the National Health Expenditure Accounts.

As would be expected, wealthy countries like the U.S., tend to spend more per person on health care and related expenses than lower income countries. However, even as a high income country, the U.S. spends more per person on health than comparable countries. Health spending per person in the U.S. was $9,451 in 2015 – 22% higher than Luxembourg, the next highest per capita spender.

The United States spends far more on health care than other high-income countries, with spending levels that rose continuously over the past three decades (Exhibit 1). Yet the U.S. population has poorer health than other countries. 1 Life expectancy, after improving for several decades, worsened in recent years for some populations, aggravated by the opioid crisis. 2 In addition, as the baby boom population ages, more people in the U.S.—and all over the world—are living with age-related disabilities and chronic disease, placing pressure on health care systems to respond.

Timely and accessible health care could mitigate many of these challenges, but the U.S. health care system falls short, failing to deliver indicated services reliably to all who could benefit. 3 In particular, poor access to primary care has contributed to inadequate prevention and management of chronic diseases, delayed diagnoses, incomplete adherence to treatments, wasteful overuse of drugs and technologies, and coordination and safety problems.

This report uses recent data to compare health care system performance in the U.S. with that of 10 other high-income countries and considers the different approaches to health care organization and delivery that can contribute to top performance. We based our analysis on 72 indicators that measure performance in five domains important to policymakers, providers, patients, and the public: Care Process, Access, Administrative Efficiency, Equity, and Health Care Outcomes.

Our data come from a variety of sources. One is comparative survey research. Since 1998, The Commonwealth Fund, in collaboration with international partners, has supported surveys of patients and primary care physicians in advanced countries, collecting information for a standardized set of metrics on health system performance. Other comparative data are drawn from the most recent reports of the Organization for Economic Cooperation and Development (OECD), the European Observatory on Health Systems and Policies, and the World Health Organization (WHO).

Other Entries

This year ProPublica documented the many ways waste is baked into our health care system, from destroying perfectly good medication to junking brand new supplies. Eliminating the waste could insure millions of Americans.